There are estimated to be over 40,000 children and young people living with a life threatening and / or life limiting illness across England and this number is rising. Often the child or young person also has very complex care needs and requires high quality around the clock care. This understandably puts a huge strain on families coping with such a diagnosis and they may require a variety of support to enable them to continue to care for their child. This support needs to be flexible and provided at the time and place that it is needed. In order to achieve this professionals across the region need to work together to improve the planning, commissioning and the delivery of services to children, young people and their families. Currently there are a number of gaps in service provision and high quality around the clock support is not always available to all those who need it at the time they need it. We need this to change!